As always, prayers sent!
And, if it helps (and it did in my time hearing others stories) my daughter spent many, many months in 2 NICU's and many follow ups for months afterwards, and today she is a beautiful, bright, healthy 7 year old who is the light of my life. Prayers brought such comfort into our lives and I witnessed many a miracle from them.
Stay strong, and in a few years down the road enjoy those tears of joy you'll shed when your beautiful pride and joy does something that melts your heart. No telling what that event may be, but believe me, everything you're going through now will flash back and its truly a transcendent moment. We're all with you, again, as always!